parenting – Emily Maxwell McLemore

Parenting the Twice Exceptional: Finding our way in an autistic, gifted, and learning disabled world

Published on April 28, 2021 by EmilyMaxwellMcLemoreLeave a comment

Parenting is complicated no matter the ability, disability, or ‘normal.’ After almost 21 years of parenting, I feel like I can say that with some authority. But this post isn’t about how well we have done; this post is a little woe is me and a lot of brain dumping as I need a place to process, and there doesn’t seem to be much for parents in a world like mine. It’s sad because I know there have to be many parents raising children like my girls, but there are so few resources and no tangible help.

To begin, I have always known that my girls were on the spectrum. I taught public school for almost 25 years and taught every age, stage, and development level. It didn’t matter that the schools didn’t recognize their uniqueness. My husband, Doug, and I did, and we managed. The schools did recognize the girl’s giftedness, almost immediately, but would not acknowledge their disabilities. It wasn’t a surprise. The girls functioned at school and passed their classes, and seemed fine. In parent/teacher meetings, their unique abilities were always dismissed as “quirky” or some other cute descriptor.

And so we were always at an impasse. What we saw (and see) at home and what we knew to be true has been a different world than what was on display at school and what the teachers were trained to see. And let me be clear, I do not fault the teachers at all. Unless you are a special education teacher, you do not have autism and learning disabilities training beyond the “big ones” like Dyslexia. Even then, it is a crapshoot at best. But what has bugged me the absolute most over the last couple of decades is that since the educational system itself does not know what to do with twice-exceptional (2e or 2E) kids, they ignore their needs and pretend like there isn’t an educational obligation to reach these kids.

But there is one. If the goal of education is that all students work at their ability, then ignoring the needs of twice-exceptional students is a failure. The safeguards for special education students are ignored for twice-exceptional kids; worse, twice-exceptional kids like mine can’t even get an authentic evaluation! Instead of offering evaluation and services, we have been told time after time that our girls didn’t need anything (since they passed the state grade level tests at the highest level..) and that we needed to adjust our expectations. We have literally had to threaten legal action to get 504 evaluations and meetings, even though we had documented medical expert advice.

So what do we do?

We walk on a tightrope covered in eggshells buffeted by swirling winds. Okay, I’m dramatic. But dang, I am tired. Every day is different. As a medical mama for almost 21 years, I know that life. I learned early what Maddie’s medical signals were and knew how to fight, when to step in, why she was struggling, and where to take her for help. But understanding the world of autism and learning disabilities, autism and anxiety, autism and ADHD, autism and depression, to put it mildly, is different. One of the best blogs on 2E kids I’ve read discusses how twice-exceptional kids are developmentally asynchronous. This is the absolute truth. Asynchronous development means that intellectual development is at one place while the social-emotional level is at another place. The greater the disparity, the harder it is to find a balanced approach to life (and parenting)!

My youngest daughter, Kylie who is eleven is a great example of this. In kindergarten she was tested for the gifted program. She scored one of the highest scores the district had seen for her age. But she refused to participate in any game, circle or classroom group activity whenever possible. She learned to read at some point before pre-k, (I don’t know when, has she always read?), has a memory in the 99th percentile, but she has a slow processing speed and a disability in math. From an educational standpoint, when I pushed to have her evaluated for autism, I was told that since she was passing all of her classes and wasn’t a discipline problem, there wasn’t a need. When I took the test results in and demanded that she have a 504 because the math homework load was causing nightly meltdowns, screaming fits and horrible evenings, the math teacher was shocked. She “seemed to be fine in class.”

And that is our greatest struggle.

Just because the world sees a child/teenager that seems to be fine, doesn’t mean that is the reality. What we have learned in the last couple of decades is that when kids like ours feel so deeply and process everything in such detail, that they have to have a chance for it to come out at night. And guess what? That means the parents get the junk. I am so thankful that we are a safe place for our girls to process life with, but I’m tired.

I’m not writing this for your sympathy or trying to sound like a martyr. Raising our girls is an amazing experience, a joy, and a privilege. But it is hard. And 95% of that hard is never seen.

So a glimpse into our world.

Obsessions have included:

A three year fixation on the Fibonacci sequence, hand written in a notebook out to the quadrillions.. or maybe it was the septillions.
Reading and AR points, earning over 100 in a single six weeks (in 3rd grade!)
Building things out of hot glue and cardboard
Money. The counting, the saving, the considering, the wondering… on and on. But no real understanding of how money works.
Television series, movies made by the same actress, movies in the same genre

Refusals have included:

Will not attend anything without mom/dad/sisters there, will not stay at an event without said family, will not spend the night anywhere without said family
Took a zero on AR for a grading period because she didn’t want to test on a book that she had read
Would not complete a project because it would come with a public award
Will not take a class that would enjoy because others might see/know
Will not participate in a group activity.. but refuses one on one lessons as well

Daily issues have included:

Autoimmune disease and autoinflammatory responses
Food sensitivity/allergies
Extreme, yet inconsistent, food aversions and limited meal options
Textures, noise and stimulation
Shredding paper
Not having an awareness of bodily needs such as being hungry or needing to use the restroom
Crippling anxiety

And these are the easy and simple things.

I don’t wish for my girls to be any different than they are. I love them, their quirks, their passions and their ideals. But along the way, if anyone could have welcomed us into this crazy twice exceptional.. okay THRICE exceptional world, it would have been nice. Autism Spectrum Disorder is not so unheard of these days, but most diagnosis information is based on how ASD presents in boys. Therefore, our twice (thrice) exceptional girls are rare!

Research articles should you be interested in reading more:

Bark: Peace of Mind for Parents

Published on September 17, 2019 by EmilyMaxwellMcLemoreLeave a comment

A few months ago a friend of mine with a house full of teenagers told me about BARK, a monitoring tool for parents to help protect their children/teens from online threats and dangerous content.

I was like cool, I’m glad you have that.. but I watch what my kids are doing, I have a content filter on my wifi. I’m good. But we are a busy family and I wasn’t really monitoring their text messages, their emails or their usage. I said I did, and I have really great kids, so I wasn’t too concerned.

But I haven’t been a public school high school teacher for 20 years for nothing! I knew that we needed more protection. So I asked my friend how the Bark monitoring was going and she raved about it.

So I tried it. And the first week trial was a bust. Why? Becuase you have to actually download the software/app and link your kids accounts. And I just didn’t want to have to fight with my teenager about linking her apps and accounts to the Bark dashboard. It looked time consuming and frustrating. So I let that be my reason for not going through with the trial.

Time moved on and my network of teacher friends and social friends kept telling scary stories of their kids on social media and deleted texts. And with that, I was all on board again. My teenager needed a new phone and I just made that the requirement. As long as we are paying for your needs and wants, we will require Bark to protect you.

The initial set up took about 30 minutes for the teen and about 10 minutes for the tween as she doesn’t have the same volume of content.

The first time I got an email stating that a potential issue needed to be reviewed, I was like OH CRAP! (That was day 1.) But I clicked on the link and saw that it wasn’t a thing. My teen and her father had been having a discussion about violence in America and she had googled content. It was a great start! No real issue was at hand, but the conversation was started about me seeing potential threats.

A few days later I got an email about her friends not so nice words being used in text messages. This allowed her to tell her friends that I don’t see content UNLESS it has profanity or inappropriate content. And that I see it whether or not she deletes it.. so just don’t send it!

And what about the tween? Well, she has been flagged for potential bullying. It was her text to her sister!!

Not every conversation has been easy. Some reviews made me stop and question what is allowable on You Tube, for both girls!

So if you are concerned about the content that your children have access to or see, I would highly recommend BARK! We still have our content filtered using Circle and we extensively use the Apple Screen Time tools, but BARK has filled a hole that we didn’t realize wasn’t actually a pothole, but a pathway. We now have a gatekeeper to that pathway and I have peace of mind.

And yep, I love Bark so much that I am now an ambassador for Bark Across America!

Pessimistically Hopeful

Published on May 24, 2019 by EmilyMaxwellMcLemoreLeave a comment

Pessimistically Hopeful.

That’s what I’m feeling today. About a lot of things, but maybe that is really the way I’m describing my life right now.

I’m pessimistically hopeful because there are potentially some good and great things on the horizon, but when you add the real dose of life experience to that hope, I’m pessimistically hopeful at best.

To start, I’m using these pictures of this spiny cactus to remind myself that sometimes life emerges from the unexpected and thought dead. You see, we bought this spiny cactus last summer at a farmer’s market and it lived in its plastic container for almost a year sitting on the edge of the flowerbed, not planted..it was forgotten although I walked by it at least once a day and regularly thought we should plant it.. but I didn’t. Through the winter and into the spring it looked dead. I figured the couple of hard freezes had gotten during the winter must have killed it.

Finally, a few weeks ago, Doug planted it in our front bed. It was listless and couldn’t remain upright without a support. Doug put the old decorative fence piece next to it and let it lean on it. A few of the sections fell off immediately and it looked sad. Dead.

But it wasn’t.

The rain, the sun and nutrients from the ground has brought it to life. The once sad looking plant is beautiful and healthy and bringing forth amazing flowers.

And so, I’m reminding myself that sometimes life does actually deliver on the potential and possibilities. I know that sounds incredibly jaded and sad. But dang, the last decade has had some really tough lessons and lingering issues were the answers were never given and the dreams and goals never reached.

But today, I’m enjoying the beauty of the flowers and praying for that same gift for Maddie’s feet.

Yesterday we met with a new doctor, Maddie’s 31st specialist. We were never actually suppossed to see him. It was an incredibly strange set of events that got us to this Neurologist over five hours away. He was kind, and interested. He was caring and deliberate. And more than anything, he listened, he looked and he took his time. In fact, the appointment was at 10am and he spent an hour talking with us and then asked if we could come back at 2pm for testing. We did and after another almost hour of working with Maddie he gave us hope.

Maddie has been wearing AFO braces on both feet for almost a year after spending much of the previous year wearing walking boots on one or both feet when one day her feet just stopped working.

She has had every test imaginable and all come back normal. There has been no explainable reason for her feet not working. But Dr. Martin yesterday said, there is ALWAYS a reason, we just have to find it.

And he might have.

So Maddie will start physical therapy and has a plan and a goal.

More than that, we left hopeful and not defeated. Over the last dozen years, we have left defeated, disheartened and discouraged time after time from specialists. We either left with no hope or were treated dismissively as Maddie is a “complicated case.”

But yesterday, we were treated with care and dignity.

And so, I’m pessimistically hopeful.

I pray with my entire being that just like the cactus that has flowers blooming despite everything, Maddie will return to college in the fall being able to regular shoes some of the time and will eventually be free from the AFO braces. I pray that her body will grow strong. I pray that she will continue to bloom, just like she always has, despite the struggles that are put in her path.

Equal Parts Pride and Sorrow

Published on September 8, 2018 by EmilyMaxwellMcLemoreLeave a comment

A couple of weeks ago we took Maddie to college. It was truly the hardest thing I have ever done. Yes, she was ready. Yes, we knew it was coming. But still, it was harder than I imagined. Maybe because she is our first. Maybe because she has so many health challenges. But no matter, it was not easy.

Here she is at Texas Woman’s University. She moved in a day before the rest of the dorm because we had to thoroughly clean her room and we knew that with twenty floors of students moving in all at once, Maddie would not be able to navigate through the crowds nor have a place to park!

When we got upstairs to her room, there was a comedy of errors as the leadership was using her room for training (you know, since no one was moving in yet..) But they quickly cleared out and bonus for us, they now knew that she was there!

Maddie’s room is on the 4th floor and the view is incredible! I’m so thankful that she has big windows and looks out onto a green space and the chapel.

We cleaned and shopped and decorated her room. Every once in a while I’d just have to stop and take a deep breath. With every placement of a picture or decorative item, I knew we were one step closer to leaving.

Maddie requested that we not cry at the dorm. So, we went out for ice cream before we left. Smart? Maybe. Or Big mistake. I’m not sure.

We really did okay.. until Kylie realized that it was time to go. Watching your baby say goodbye to her sister. Dang. That was brutal.

And then Maddie had to turn and walk away in one direction and we turned and walked in the other direction to the car. I felt like my heart was being ripped out. No, I’m not being dramatic. It was that hard.

Doug drove home and I cried. I wanted to turn around and go back for her. But we didn’t.

Maddie is doing great and making friends. So far, her health is good. My prayer is that she gets truly settled in school and has bonded with her professors before her first relapse. Not seeing her everyday is hard. I can’t look at her face and see how her body is holding up. I can’t hold her hand or touch her shoulder. I’m not there to offer a piece of pumpkin bread or run get her a snack. It sucks.

And that is why sending my child off to college was equal parts pride and sorrow!

Tips for Families with Special Needs on Enjoying Disney World

Published on July 19, 2018 by EmilyMaxwellMcLemoreLeave a comment

Disney World is a place of magic and wonder. Sure, it’s also incredibly expensive and crowded and hot… but those things just don’t seem to matter when you are standing in front of the castle at Magic Kingdom!

There is something so incredible about being at Disney World and the feeling of expectation and fun and hope. I don’t know if everyone feels it, but as a family that has lived in the world of doctor visits, special diets and treatments, diagnostic tests and rare diseases for the last 18 years, Disney World gives us a chance to live and love and laugh “just like everyone else.”

No, the problems that we face everyday don’t vanish on Disney time. But the problems just don’t seem so big or so hard. Instead of researching unknowns and sitting for hours in doctor’s offices, we research which restaurant to eat at and how to get the most out of “magic hours.”

So here are a few tips for families with special challenges from a seasoned Disney family! Truly… we just returned from Disney for the 5th time in 6 years.

Plan early!

We typically use a travel agent (Cowboy Way Travel) because they know us and know our needs. But Disney online and over the phone work great as well. I’ve just found that for our needs (two connecting rooms with ground floor access and a scooter), the travel agent can take care of everything and it works. And since we use a travel agent, we also purchase trip insurance. EVERY. TIME. It’s worth the cost.

Also, by planning early you can make the best use of the early reservations for meals and fast passes. We are talking making plans 180 days out for dining and 60 for rides/attractions!! I know the needs of my family and waiting till the last minute to plan a trip means that you miss out on the best times for rides and meals.
It’s not an adjoining room.. it’s a CONNECTING room!

Even as seasoned veterans, when we got to our rooms we found that we had rooms next door to each other, but not connecting! Uh Oh. This doesn’t work with an 8 year old! Disney defines adjoining as touching and adjacent as near by.. if you need the rooms to be able to open inside to each other, you need a CONNECTING room. Our rooms situation was easily remedied, but it’s an important distinction to keep in mind as at peak times you might not get a connecting room if you asked for an adjoining room!

Rooms at Riverside
Speak up!!

When you run into an issue, SPEAK UP! Give Disney a chance to fix the problem.
One night when we ended up in a monsoon and the bus driver was horrible, we spoke up. Why? Because Disney cares and they work too hard for a bad experience to color the rest of the trip. Taking the time to talk calmly with the concierge allowed us to express our frustration and gave Disney the chance to make it a positive.
If you need the disability access, USE IT!

But, remember to take ALL of your family’s magic bands with you when you set up access at guest services. You only have to do this once each trip as the disability information is in the magic band. Also, once it is set up, any member of the party can “badge in” and request disability access to a ride/attraction. The key here is to manage your disability access as you can only have one outstanding at a time! The gift of disability access is that you don’t stand in line. It doesn’t make the wait go away, so plan accordingly! We know that we can’t wait in the heat/sun, so we go to shows while we wait for the next attraction.

And if you haven’t seen Festival of the Lion King, it is WORTH IT!
Plan down time.

One of the hardest things for me to do is “waste” daylight at Disney, but I’ve learned that in order for Maddie to function for the duration of a trip, she has to have down time. So while the big girls napped, Kylie lived it up at the pool and the playground. Port Orleans Resort has great pools and a fantastic playground. Side note: besides being more spread out, Port Orleans is great for families as the rooms are larger, the place quieter and the amenities spot on.
Expect to wait for a bus.

Hands down, the most UNmagical thing about Disney is waiting for the bus to transport you from park to park or park to resort. If you are in a wheelchair or scooter, the wait can be a while as they only take one or two chairs on each bus. Sometimes these waits are in the rain and sometimes these waits can be an hour (or longer!). Plan for at least a 40 minute wait and then be pleasantly surprised every time you arrive at your hub and find a bus on its way in!
Take your own ponchos and an extra pair of shoes!

In case you didn’t know.. it rains in Florida. Plan on getting rained on.

The ponchos at Disney are expensive and tear super easily. We purchase our own ponchos that are heavier plastic and bring them with us! Also, since Maddie uses a scooter, she gets a larger poncho that will fit over the scooter so that she can drive it and stay dryish.

Bring an extra pair of shoes.. or be like me and spend an hour sitting in the laundry room holding the door to the dryer closed with your back!
Find the accessible areas for watching the parades.

Parades are really cool to watch. Unless you are in a scooter/wheelchair. Find the accessible areas for watching the parades and take a seat on the curb. It was so fun to watch the girls watch the parade. We are big fans of the Fantasy Parade as it is at 3pm in the afternoon at Magic Kingdom and we can see that one. It just doesn’t matter how late of a start we get, we can’t make it to a firework or evening show as a family. When the sun goes down, my family fades fast.
Ask to speak to the chef.

If you have special dietary needs, Disney can’t be beat!

We really wanted to eat at Be Our Guest.. I mean really, who doesn’t want to eat at Belle’s Castle?! But the menu options were not great for Lexi and Maddie who can’t have the normal breakfast items! So we special ordered off the quick service menu and the chef came out and asked us a few questions and then like magic breakfasts for both girls appeared that were egg and milk free! And it’s not just this one restaurant, it’s all of the Disney restaurants!!
Make sure the other kids don’t get left out in the process.

With so much of what we do and who we are as a family focused on keeping Maddie well, our other girls get lost in the shuffle. Disney is a place for magic for them as we are able to devote special moments and memories for the girls by themselves.

Magic hours have become our special one-on-one times and are truly those magical memories that get us through some of the hard spots throughout the year.

Lexi and I stayed at Magic Kingdom until almost 2am one night!

And Kylie and I snuck away in the afternoon to Epcot one day and then Hollywood Studios one morning. Spending time with one child is so different than with the group!

I truly have so much more to say, but I’m thinking just this is overwhelming. So I’ll leave you with GO! Just Go for it. I know it’s expensive. But we spend SO MUCH MONEY on healthcare that we have to spend some on our emotional health and our family too.

I commented the other day to the girls and Doug that as we move into the next phase of our lives I don’t know that we will go to Disney as often. Lexi and Kylie were very quick to speak up and say that Yes, we will be back soon!

Yearning

Published on June 12, 2018 by EmilyMaxwellMcLemore1 Comment

I have so many thoughts swirling in my head.
So many things I want to say.

But I can’t… cause I’m struggling to process it really myself.

I’m really not trying to be one of those vague woe is me social media posts people.. You know.. post

But guys, let me just say…

Specialist #25 had no answers for Maddie’s bilateral foot drop. We stumped him. And he was supposed to BE THE ONE. She has no nerve damage and no neurological reason for her feet to have just stopped working. The doctor was nice and concerned, but he had no answers.

Guys, I was scared to death over this appointment. We were assured that we would get some answers today. But Maddie knew. She didn’t have her hopes up.

And why should she?

Her entire life has been No Answer. No Reason. No Explanation.

So we have been referred to Specialist #26 and hospital #7.

And yes, of course we are thankful that more of the incredibly scary diagnoses have been ruled out. But could we, maybe, someday get an answer?

The yearning doesn’t go away.

The ache is ever present.

The hurt tangible.

Graduation

Published on May 29, 2018 by EmilyMaxwellMcLemoreLeave a comment

Graduation has come and gone and with it, Maddie completed her high school journey. There were many times over the last twelve years that I wondered if we would make it to this point.. but we did.

Watching Maddie graduate was wonderful, yet like every other accomplishment in her life, it was not without a struggle. Maddie has been wearing two walking boots for about a month now and these boots, while worn for protection and the ability to walk “normally,” are not easy to navigate ramps and uneven ground in.

But Maddie does just that.

I am so proud of her. It’s hard to not get weepy when I consider her struggles and her accomplishments. Many would use the daily pains and hurts as excuses to not leave the house, but Maddie perseveres and refuses to give up.

Maddie’s educational journey is really just beginning. She wants to be a music therapist, so that means two degrees, an internship, and a board certification. I know that she is going to do incredible things and be a difference maker for children who face physical and/or cognitive struggles.

So for those of us out there who get frustrated when life doesn’t meet our expectations, I ask you to remember those like Maddie who face daily struggles of chronic pain, chronic illness, rare diseases and complex and often undiagnosed problems.

Since Maddie can get up each day with a smile, a song in her heart and the desire to reach her goals, surely we can join her in that journey!

Yesterday you were a child, Today an adult..

Published on May 6, 2018 by EmilyMaxwellMcLemore1 Comment

Maddie turned 18 this week. Of course I knew this was coming.. but I still wasn’t ready. We have been working on college scholarships and planning graduation events, but somewhere along the way I forgot that with graduation and college, my “little” girl was going to become an adult.

Unlike many parents, I’m not worried about Maddie being a responsible adult. Maddie has been responsible pretty much her entire life. And it’s not that I can’t let go.. I will and am..

But here is the deal.

For 18 years I have spent pretty much every breath that I have in me protecting Maddie’s health. I have spent thousands of hours in doctor’s offices, in waiting rooms and researching diseases and cures when the specialists didn’t even know what to do or how to treat her.

And then, starting at 12:01am on Maddie’s birthday, I started getting the emails.

“You have been unlinked to Maddie’s account”

“This email has been removed from the account”

“You have been removed from this account”

over

and

over.

I have been removed and unlinked from Maddie’s life.

There aren’t even words to describe how that feels. Maddie didn’t choose to unlink or remove me. An automated system that just the day before wouldn’t allow Maddie to make a single decision for herself now requires her to make all of the decisions and excludes me from even seeing her account!

It hurt.

But more than that, it scared me.

I wasn’t ready and I hadn’t downloaded all of Maddie’s files. I realize now that I should have been more proactive, but dang.. just living in the trenches is hard enough. Someone should have warned me! That automated system should have sent me an email 30 days prior saying that unless Maddie authorized it, I would be removed from her accounts.

For those of you out there that have never had the struggles that come with having a child with 13 different diagnosis codes and almost a dozen different specialists, I’m sure you think I’m overreacting. Just hang with me a moment…

This week along with Maddie’s birthday, she has had some ongoing and new health issues. She saw her primary doctor who did blood work and is working to get in to see two of her specialists next week. Both specialists will need to see the results of the blood work. None of these three doctors work together or are part of the same network. My job for the last 18 years is to be the manager and provide all of the paperwork and logistics for each of the various doctors. Now it’s Maddie’s responsibility. A responsibility that Maddie will take the lead on, but truly wasn’t ready to take on. As she said, when the doctor’s office calls with results from the blood work, she isn’t even going to know what they are talking about! And Maddie is an educated patient!

I can’t help but be a little terrified.

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Fostering Creative Thinking

Published on April 8, 2018 by EmilyMaxwellMcLemoreLeave a comment

Children are innately creative. I know this. I see this everyday. Yet I regularly hear adults say that their children aren’t creative. I try to be nice. I’ve learned to just keep my mouth shut and not call out these parents, but oh it is difficult! Children NEED to be creative. It is who they are! From invisible friends, bringing soldiers and dolls to life, and even simply playing house, being creative is a necessary part of a child’s growth and development.

Why do parent’s say that their children aren’t creative? Well, over the years I’ve decided that it is a control issue. Creativity is often messy. Creativity requires a suspension of disbelief. Creativity embraces differences and pushes boundaries. All of these are areas that make adults uncomfortable. Believe me. I know! Even in my world where creativity is a prized treasure, it is still messy and at times drives me crazy.

But it is worth it.

So what do you do if you can’t fathom the thought of glitter in your carpet, paint on the back porch, a million legos underfoot or blanket forts in the living room?

Well, start simply.

There are some great games that you can play. While Kylie is the one pictured here, all of my girls are willing and happy to play the games in the pictures together! And that is a win in and of itself! Our family plays games. We play card games, board games and dominoes. We put puzzles together and build lego creations. If the idea of Playdoh crumbs smushed into the kitchen table and chairs gives you the willies.. start with games like Otrio, Trax or Mental Blox.

(FYI.. this is NOT a paid advertisement.. these are my real life recommendations!)

Fostering creative thinking is a soapbox issue for me. Why? Because I’m amazed at how many adults DON’T KNOW HOW TO PROBLEM SOLVE! And we as a society are not teaching nor are we modeling to our children how to problem solve, how to come up with new or different solutions to problems or even how to think for ourselves!

While I am a huge advocate for technology and I want equal access to information and all that technology brings, I am worried about the immediate reaction to just “google it” when something doesn’t work.

Resiliency is more than being able to survive when the internet is down!

We have to model and teach children that when there isn’t a clear answer, sometimes we have to simulate the what-ifs and work through options. We have to not only allow FAILURE, but embrace it and show our children how to move through failure to success!

So there you have it. I challenge you to go be creative today. And no, you don’t have to go paint a picture or create a sculpture to be creative. Go play a game, create a fairy garden in the flower bed, build a treehouse.. do something that doesn’t already have a set finish point and that requires your brain and your body to work together in a new way!

And finally, enjoy the journey

Primary Immunodeficiency

Published on January 29, 2018 by EmilyMaxwellMcLemoreLeave a comment

Saturday afternoon as I sorted the mail, I wasn’t expecting a sucker punch. But I got one. There in a seemingly innocent receipt from one of our specialists was a new diagnosis for my daughter. No explanation. No preparation. Nothing. It was just listed there between Unspecified asthma and Other allergic rhinitis like a harmless friend.

But its not. In fact, nine vials of blood were sent to the Medical College of Wisconsin (the only center in the country to run the incredibly specialized tests that she had to have) last spring to see if maybe we might have some answers. And we were told no. That the tests were inconclusive and that we should just stay our course and not change treatment.

And then bam. There in black and white and insurance codes was D83.0… that’s Common Variable immunodeficiency with predominant abnormalities of B-cell numbers and function .. for those untrained in insurance codes.

Guys, that’s a primary immunodeficiency and we are smack dab in the middle of a horrible flu season and my child is getting no preventative or precautionary medical treatment.

I am RUNNING SCARED!

You would think by now I’d be use to this kind of crap.

I’ve been a parent of a sick child with rare diseases for eighteen years.

But I’m still scared.

Tonight as we face the week ahead, all I can do is pray for my sweet resilient daughter and pray for her protection. Her incredibly complex medical picture makes easy answers and typical protocols not work for her.

So please you guys out there.. if you are feeling achy, tired and run down, do me a favor and stay far, far away from my girl. I desperately want to keep her home the next couple of weeks, but that isn’t possible. We joked tonight, as we have many, many times over the years about needing to get her a bubble.

Tonight my laugh was brittle.

Plan early!

It’s not an adjoining room.. it’s a CONNECTING room!

Speak up!!

If you need the disability access, USE IT!

Plan down time.

Expect to wait for a bus.

Take your own ponchos and an extra pair of shoes!

Find the accessible areas for watching the parades.

Ask to speak to the chef.

Make sure the other kids don’t get left out in the process.